Doctor Shopping - We Need Your Help For The Mary Kidson Trial

I hope it's ok to post this here.

You might have read about Mary Kidson, the Mother accused of poisoning her Child by administering Natural desiccated thyroid extract, hydrocortisone and oestrogen tablets – with malicious intent to cause her grievous bodily harm.

Please see independent.co.uk/news/uk/c... to read the first day’s reporting of this case.

The barrister for the prosecution has accused Mary of "Doctor Shopping" until she found one who would give her the diagnosis she wanted.

The trial started last Monday 13 October 2014. The defence case, hopefully will start some time during the course of the coming week and the barrister urgently needs your help. You can help by telling him how much "Doctor Shopping" you were subjected to before you found one that helped you ( private or NHS) – or – did you never find anyone to help you – so you are still ‘Doctor Shopping’?.

So, please let us know how many GP’s/endocrinologists/other medical practitioners that you had to go through before finally finding one that helped you – and over how many years did it take you to do this.

It will help greatly if you write (in brackets) the number of medical practitioners you have gone through at the bottom of your message.

Please respond to maria@tpauk.com (If you are also a member of TPAUK and have replied to our email, please don't answer again as we don't want to count anyone twice.)

We are really appreciative of the help you can give us and if you are a member of any other online thyroid forums or thyroid facebook pages, please post this message there too and ask them to take part.

Many thanks for your help.

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76 Replies

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  • rosetrees - can I just check that e-mail address as there looks to be a bit missing?

  • Thanks cinnamon_girl. I'll edit it right now.

  • Thanks!

  • Done!

  • I have sent my response.

  • Me too x

  • It's a really sad case to read. The Belgium drs right about the nhs's treatment of patients. They just don't do preventative care. They wait until you're too ill and on deaths door and parts of you have been destroyed before they step in which by this time it's too late.

  • Gosh if this case goes the wrong way then getting NDT will become impossible to get. I hope the woman gets the support she needs

  • My first question is why are you asking, and is this in some way to be used for the defense? Working in healthcare it is easy to find cases like these where patients trawl from doctor to doctor because they either want an answer to something that they feel is wrong, or they want to just have something wrong, irregardless of what it is.

    We also see it in forums "I keep getting symptom x, is it related to my condition y?". Sometime yes, sometimes not. It's sad that people will seek out a problem when there really isn't one there. I'm trying not to genarilise and sorry if I upset anyone, we are all here as we have a diagnosis or strong symptoms. But it is sad fact that sometimes the physical problem is only manifest due to the psychological, but the psychological is much harder to accept.

    I find it worrying that this woman was only satisfied it seems when someone said yep, give those to your child. All substances are poisons in high enough concentrations. Our bodies are designed to keep these substances in a fine balance, and it does not take much to upset this. That's why we have careful blood monitoring to ensure we do not under or over dose. Even running a little over on your thyroxine, over time, can lead to heart failure. Hydrocortisone overload risks heart disease and diabetes, too much oestrogen means increased cancer risks. Serious stuff, and certainly not what I would be doing to my kids.

    I hope the daughter finds hope and that she gets the help she needs to feel healthy and get on with a long, safe and happy life. I also hope that the mum gets help too, she needs it as much as anyone, before she does herself any damage.

    If you're not happy with your doctors opinion, find another, you're entitled. But if they all start saying the same, then maybe they're right.

  • Or maybe they aren't. I wonder how many people on here saw numerous doctors who fobbed them off, jeered at them, sneered at them, shouted at them, dismissed them or were just plain bloody rude. My own personal experience.

    Not one single one in 38 years was ever interested in even letting me tell them my symptoms, and the idea of testing me was anathema to every single one. I finally found out what was wrong when I made a positive decision to take matters in to my own hands.

    Sadly, this is what the majority of people with adrenal issues, pituitary issues and complicated thyroid issues have to do. Otherwise, according to doctors, I would still be a depressed cardiac patient.

    As to why we're asking, I think (or hope) the original post made it clear.

    I might add, if I were feeling so minded, that I'm pleased you would leave your child to suffer rather than run the risk of side effects later in life. I've chosen life with possible side effects, over a half life.

    I'll also add that I have never seen any evidence that low dose cortisone leads to any of those side effects you mention. As far as I'm aware there have never been any studies run on the use of low dose (physiological dose) HC in patients with low cortisol. All the studies measure the effects of therapeutic (high doses) - and those effects can be catastrophic. I've seen them with my own eyes.

    Most doctors, apparently, prefer to leave children untreated. Not a vast number of children, but a significant number. Most diagnosed with ME and consigned to the dustbin of medicine. Many living half lives in a darkened room, tube fed and unable to stand. All for want of proper testing for cortisol, pituitary, adrenal function and for want of effective treatment. I know which life I'd rather choose.

  • I'm sure Saramae meant well and I'm also sure that there are patients who run to the doctor for the slightest thing (I have an aunt who embodies that notion).

    The problem within the health service is the in-built bullying that starts at the top, disseminates down through the staff and finishes up with the staff taking out their own frustrations on the patients.

    Doctors are simply not allowed to diagnose and treat us. Look at this video

    Watch it all if you have time, it's amazing.

    At 6.13 he says "we doctors are not allowed to diagnose and treat". To prove that he has now been restricted by the GMC to ensure that he does not diagnose and treat. Also listen to what he prophetically says at 18.16.

    The bullying and pressure from above (probably coming from the drug companies via the College of Endocrinologist) ensures that all doctors nationwide refuse to engage with us. What we need is doctors to rise up against the bullying from above.

  • I have seen that video but will definitely watch it again, thank you, especially as I'm waiting for my Genova test results.

    Yes there are people who through anxiety or whatever reason, run frequently to the Dr , and then it becomes clear that they need help with whatever is driving that anxiety (which is fortunate for me , professionally, lol) but I'm reminded of the wording on Spike Milligan's headstone "I told you I was ill". Interestingly it had to be written in Gaelic on the order of the Chichester Diocese, I wonder why.

    Prior to retraining as a therapist, I worked for 30 yrs in social housing, starting at the time of the Cathy Come Home film, and they were certainly challenging times, but I never once took my frustrations out on a tenant.

  • I want that on my headstone!

  • We could probably get a bulk discount from a stone mason - we could keep them in work for years !

  • lol

  • Saramae70, if you do not believe that people who are dissatisfied with the health care they, or their children are receiving, should seek a second, or third, or fourth, or however many other opinions, why are you here on this forum? People who feel well-cared for and well-medicated by their medical advisors surely have no need to seek other, lay, opinions - which is what this and other forum are all about, surely? We are here seeking information and hopefully new ways of either negotiating better medical care, or ways to go it alone because we have been failed by the medical profession. So what is it that you are doing by being on this forum, if not looking for alternatives to an inadequate care plan and treatment i.e hopping from Dr to lay person? And surely as a parent, the needs of our child are paramount, and we are biologically driven - if we are a caring, responsible, loving parent - to seek help for them when necessary. I am assuming that you have never been put in a position with any children of your own, similar to that mother, but I have with both my sons, and it is invidious. The elder one spent his life, into his 20s, in almost constant agony and plagued by horrific constipation, diarrhea and anal blood loss. Through it all he never lost a day's schooling, university education or work but he was, as it turned out, at death's door. I was told I was an over-anxious mother and there was nothing wrong with him. Until the day he passed into unconciousness in Liverpool and nearly died. Had it not been for the quick thinking of his friend who bundled him into her car and took him to St James hospital where he eventually got a diagnosis of very severe and life-long Crohns, he would have died. But remember, there was nothing wrong with him, i was simply an over-anxious mother. Then along came my second son, who started to go down hill literally from the day he was born. My GP said I had an inadequate milk supply and was an over-anxious mother....... At day 10 of my son's life, and barely alive, a very young - and interestingly - Chinese locum took one look at my son, asked how long I had been a mother (20 yrs at that point) and declared that I clearly knew more about my children's health than he did, and my son was immediately admitted to hospital where he hovered between life an death for a long while. And guess what, both he, and my elder son, have a very rare X-chromosome related metabolic disorder, that in most cases is fatal. But remember, all their symptoms were due to me being an over-anxious mother. I did absolutely all I could have done for my second son but i will go to my grave with the guilt that I didn't Dr-hop for my elder son and saved him 20 plus years of agony and ill health - never mind the damage done because he wasn't treated early enough.

    I think I intuit from your post that you work in health CARE, and yet you appear to be unable or unwilling to first apply empathy in considering this Mother's plight. Certainly it is not unknown that (very rarely) parents and other care-givers can suffer from Munchausen by proxy, but I'm assuming that as this case has got to where it has, that this has been considered and declared not the case here. You say that the physiological problem here is a manifestation of the pyschological and yet you have confusingly concluded that is the Mother's psychological problem that has manifested itself in the daughter's physiological problems.

    I am pleased that you have received careful monitoring of your bloods and condition, but over 33 yrs since diagnosis, that was not my experience until I started putting my hand up and asking for more, and then as i continued to receive poor or no proper care or consideration of my symptoms, yes, I began Dr Shopping, and then I began Endo Shopping to - all around this country, i might add. And now, I am self-medicating at a not inconsiderable cost to my pocket, whilst still paying into the NHS of course through my taxes.

    If you do not wish to aid this woman's cause, fair enough, each to their own, but why criticise her publicly, and then apologise if your views upset anyone reading them.

  • My daughter nearly died due to GP who basically wasn't interested & who had her full medical history. If we hadn't 'doctor shopped' she wouldn't be here today.

  • It's so scary halifaxlass, that there is such poor practice out there. Well done for your persistence.

  • When your children are concerned there are no choices x

  • My experience wasn't as life-threatening as all of yours, but I got the same reaction from the medical fraternity as you.

    It took me three years of dogged persistance to get my son't eye problem diagnosed. Meantime, he couldn't work at school because he eyes were red and weepy, the light hurt, and he had constant headaches. But I was an hysterical, neurotic, obsessive mother. Of course.

    Finally, we were referred to a big hospital in Paris (nightmare experience!) and a bitch of a female opthamist spotted the parasites on his eyelashes. She said that in all her fifteen years practicing, she had never see that before, and had to consult many books and call in several collègues. She gave him a treatment to apply with a mascara brush and it all healed up very quickly.

    But she still saw fit to write to my doctor telling him that I was neurotic and over-bearing and my neurosis was affecting my child. I suppose the parasites were just there for decoration!

  • Thank goodness you finally got him treatment & if you hadn't been 'overbearing and neurotic' no doubt you'd have got no further forward !!

  • Exactly!

    Apart from the abuse heaped on my head, I was also told he was lazy and it was his excuse for not working at school - this from a so-called specialist who didn't know us from adam! And that he was just attention seeking - oh, they do love that one, don't they! But nobody could explain how you just summone up red weepy eyes at the drop of a board wiper! That was another 'ah, well...' moment!

    I'm not saying that my son was a brilliant scholler held back by his eye problem, he hated school. But he also hated headaches and being unable to read. And feeling too ill to go out with his friends. There was no way that was all in his head - apart from the position of his eyes...

    We were told he needed glasses, bought glasses, didn't help. Then that he was seeing 'upside down'??? He was given eye exercises which he did religiously. Didn't help. I know it wasn't a life-threatening condition, but the proof was there in his eyes, and still they wouldn't believe it! One doctor even asked him, a fourteen year old boy, if he wore eye makeup!!! I thought he was going to hit her. lol Any excuse to blame the patient! It really makes me sick!

  • My daughter was told at 16 years of age during something like a 5 minute appointment by a so called 'consultant' that if she wanted to have a baby to book another appointment. She was still at school !!!!!! I'm just constantly grateful we eventually found someone who gave a damn x

  • What a very strange thing to say! They really don't appear to think before they speak; do they!

  • Grrrr ..... Imaginary attention-seeking parasites, obviously !!

  • Just like us!!!

    But, seriously, it's a good thing to know, because I would never have guessed that such a thing existed! Lord knows how he got them. None of the other kids had them. It's a mystery that, of course, nobody tried to solve.

    So, if you or someone you know, has red weepy eyes, headaches, etc. Do think about that and get it checked. She could only just see them with her microscope thingy - can't think of the word - so they could easily be missed in an examination.

    Lord! I sound like Dixon of Dock Green! lol

  • Saramae, "It's sad that people will seek out a problem when there really isn't one there." The problem is there. The patient has clinical symptoms which are ignored because the patient's TSH is 'normal'. It's long been known that hypothyroid clinical symptoms can precede abnormal bloods by years, sometimes decades.

    "That's why we have careful blood monitoring to ensure we do not under or over dose." Patients are more likely to be under medicated than over medicated and some patients need low in range TSH while others need suppressed TSH to feel well. Since the TSH test was introduced in1973 patients are dosed by 1/3 less than when they were treated purely according to their clinical symptoms prior to the test.

    "Even running a little over on your thyroxine, over time, can lead to heart failure." What evidence do you have for that? Research shows suppressed TSH and slightly over range FT4 don't increase heart risk. Elevated FT3 over a long period may increase risk of atrial fibrillation but there isn't evidence yet to prove it.

  • saramae, you sound just like an endo lol

  • Saramae, apart from all the other obnoxious things you have said, which the others have dealt with, I would just like to say that I don't believe in hypochondria, that's just another way of blaming the patient because you don't know what's wrong with him.

    "Working in healthcare it is easy to find cases like these where patients trawl from doctor to doctor because they either want an answer to something that they feel is wrong, or they want to just have something wrong, irregardless of what it is." How rude! When you are ill, don't you want to know what is wrong with you? 'Trawl from doctor to doctor'? Rather than criticise these people, you should have a little compassion for them that they can't get decent care or a doctor who knows what he's talking about. 'They want just to have something wrong'? You are joking, of course. Who would WANT to have something wrong with them? If they say there is something wrong with them then there is something wrong with them! When are you health professionals going to learn that? We know our own bodies - as, I suppose, you do. Would you like it if you were told there was nothing wrong with you when you knew for certain that something was very wrong? Yes, it's quite obvious that you work in healthcare, you have the same dismissive attitude.

    This mother is just trying to save her daughter's life. And she has gone to enormous expense to do so. Do you really think that she would lay out thousands of pounds just to poison her daughter? How crazy is that? She could just spike the girl's food with fly killer or something cheap if she just wanted to dispose of her. Such faulty logic. Typical.

    Then, there is the question of the doctor concerned:

    If Doctor Theirry Hertoghe said she needed those hormones, take my word for it, she needed those hormones! He is an expert with the patient's well-being upper-most in his mind - unlike a lot of doctors I could mention! He is brilliant and has saved a lot of people's lives. Why don't you Google him or something, read his credentials. He has Hashi's himself, as did his father - another eminant hormone specialist. He is one of the only two doctors I have any respect for. He wouldn't put his international reputation on the line by giving people hormones they don't need. But, once again, we have a lack of logic here...

    And yes, you have upset me with your lack of tact, comprehension, knowledge and compassion.

    I don't think the NHS is known for treating its staff any better than the general public, so I hope for your sake, that you never become one of these difficult patients and get treated like an imbecile. But if you do, you'll know exactly what we're talking about.

    Grey

  • SaraMae,

    I'm disappointed and saddened by your reply to Rosetrees.

    Dr Fraser says that Dr Hertoghe wasn't/isn't an endocrine specialist. Dr Hertoghe is the fourth generation of a family of endocrine/hormone medics. He probably learnt more medical stuff, as a boy, sitting at his family's kitchen table than most uk doctors do at med school where they're wined, dined, primed and pimped by Big Pharma's self-serving tutorials and reps.

    Dr Hertoghe said it best when he criticised the NHS, saying it was stifling valid practices and describing it as "an authoritarian medical system which more than others refuses autonomy to patients.”

    You infer that you work in "healthcare".

    HEALTH CARE

    Meditate and ponder on those TWO words and what they stand for.

    I have been let down for a quarter of a century by a myriad of GP's, hospital consultants, nurses and admin staff. Every aspect of my life has been damaged by the imbisciles that are paid to work and care in Britain's HEALTH CARE and Britain now pays for me to stay off work because of the inability, ignorance and ineptitude of those medics who failed to correctly diagnose and treat.

    When I started sleeping up to 18 hrs a day, the GP's should have had the ability to correctly diagnose and treat me - and yet they didn't. Neither did any hospital clinician. They, instead, just told me to use an alarm clock.

    You, and others like you - who kid yourselves that you're in HEALTH CARE - berate the patient for being ill, rather than berating yourselves for lacking the skill and expertise to speedily and correctly diagnose.

    Thousands upon thousands of individuals, year after year, lose their health, hope, lives, relationships and careers - and on top of all that, are confronted with the cold, hard, brazen statements by you and others like you who, astonishingly, imagine and pretend you're in HEALTH CARE.

  • Everything above hasn't surprised or shocked me at all but the post is rather old... not that anything changes! Thierry Hertoghe is from a veritable dynasty of experts in this field; oh how these snivels scorn those who DO know.

    Londinium: end Sept 1979, I was so fatigued that I could have lay down on any curb to sleep [following that which Dr S decided was likely glandular fever in March of that year, not German Measles as I put it down to and didn't go to the docs... waste of time even back then to me due to my underlying odd, often inexplicable, health problems... suffered by other family memebers]. At that point, GP told me, "There are 168 hours in a week, I know I work most of them, you're tired TOUGH". Following an arrhythmia finally being found [privately] in 2007 and my being plagued by one thing after another [dismissed by two endos], February 2010 Dr S and May 2010 Dr P finally diagnosed me... signs that were undeniable and before/during pics where I looked like they did > 100 years back [lucky folk who got treatment!]. To this day, after almost six years of treatment [T4 no good, Armour really good for a while, then T3], I freeze every winter, sometimes 34.5 C even in Summer, and still have some signs/ symptoms but much improved now, I am told that I never have been and am not hypothyroid. Oops, also that I have damaged myself by using the 'rubbish' that I take.

    SaraMae70, you simply have no clue... none: I have watched my family dying with dreadful illnesses [most were also undiagnosed hypothyroid... with that trundling away in the background]. For example, my father died at 54 y/o after almost 20 years of huge polypharmacy [they didn't know what was wrong with him... so one drug after another]; hey it became Motor Neurone Disease not malingering after all. Mother: highly specific pain... ridiculed at 71y/o for malingering [from what, they could not specify] when it was pancreatic cancer. The list is long, as stated this post is old... seems to me that until SOME people experience something for themselves, they just won't listen.

    Thank you Londinium, your words are applicable to so many of us. Aside from not being as competent today as many of us would hope, it is this patient blaming... skulking, snivelling, snides; but not all of them.

  • SaraMae,

    As for your final comment - "But if they all start saying the same, then maybe they're right"...

    The Senior Registrar of a major London hospital informed me in an appt that he would like to be honest with me, but that he could not be honest because he'd be in "big trouble" with his Lead Clinician, his colleagues and the hospital, and that it would affect his reputation and job. He said that if he could not tell me his honest opinions verbally, he certainly could not do so in writing to my GP. When he then wrote to the GP he did not mention what he'd told me in his letter, and instead wrongly stated that the Lead Clinician had been present throughout our appt. His letter was a lie.

    These people are not fit for purpose, should not be working in Britain's hospitals and should not describe their clinics as Centres of Excellence.

  • So the 'senior British doctor' dismisses Dr Hertoghe as a quack and I assume by the 'rigorous testing' he is referring to the precious TSH test... Hmmm. In the services we used to have a saying for precisely this scenario: Pot... Kettle... Colour-check, Over!

  • As an aside really. I have my results from I was first ill in 1976. My thyroid was tested several times - FT4 and FT3. TSH was never tested. Interesting?

  • Very! However, the TSH test was only hailed in 1973 as the 'new miracle test' so it may have taken a little while to filter through the system to patient levels.

    There is a very interesting article about it here: thyroid-info.com/articles/d...

  • Very interesting interview, Zephyrbear. Thanks for posting it.

  • Rosetrees yes, many have responded since Thyroid UK posted this:-

    thyroiduk.org.uk/tuk/news.h...

    which gives the details of how and who to write to.

    Sue

    thyroiduk.org

  • That was an appeal by Thierry Hertoghe for people to write their stories of how their health improved once they started taking hormones.

    This is a separate appeal, specifically for people to tell Maria how many doctors they saw before they got a proper diagnosis.

  • I will have a look thanks

  • This article makes me sick.

    > indulged in “doctor shopping”

    Indulged? Really?! Ugh. That's what we do in america. Medicine is private and you shop around for a physician who meets you needs. It is not some kind of indulgence.

    > Dr Fraser said: “We could conceive of no reason rationally for [the daughter] being prescribed these things.”

    Well, my partner's cortisol levels were basically 0, total crisis level and they wouldn't prescribe him a steroid.

    The sick sad part is that people are brainwashed into trusting these empty white coats.

    > that the daughter had been psychologically damaged

    I'm psychologically damaged from my partner being trapped in your country under the care of such a sick system.

  • In fairness to the reporters last week (what, I'm defending the press???), they were reporting on what was said by the prosecution.

    The defence starts some time this week (not sure when), so watch to see what is being said then.

  • Yeah, but you can bet the press embroidered it a bit to get a sensation! Don't you think?

  • Almost certainly. Regrettably I am barred from attending as I might be a potential witness so can't attend until they've decided to use me or lose me. Soooooo frustrating.

  • I can imagine! And I'm sure you'd make a very good witness! I do so hope it all turns out alright for this poor woman. And her daughter. All they've been through is so unnecessary. And what they are doing to that poor child is child cruelty!

  • Doctor shopping isn't illegal in the UK, as such. It is just that the medical profession as a group has, for many decades, acted as if they are a higher form of life than the patients, and the patients are idiots who should just do as they are told. They don't like being questioned, they don't like it when someone asks for a second opinion, they don't like it if people read up on their symptoms, conditions and treatment on the internet, and if they tell a patient there is nothing wrong with them they don't like it if the patient decides to find out for themselves whether or not this is true.

    This article is quite old now, and I think the blog post referred to has been deleted but it is still indicative of the attitudes we have to face in the UK :

    thyroid.about.com/b/2008/05...

  • Doctor, I have paid extraordinary sums to private doctors to try and get to the bottom of my problem and get adequately treated - I would be a rich woman by now if I hadn't had this illness. But it didn't mean that I got the answers I was looking for, or that the doctors I paid were any more knowledgable than the others. It really has little to do with money in the end.

    We - all of us here - know that it is imperative to include signs and symptoms in our treatment. Trouble is, doctors don't. They are not trained to recognise symptômes, or even look at the patient, they are trained to do blood tests and prescribe drugs. To be totally vulgar, they are just pimps for Big Pharma. There is no diagnostical skill anymore.

    And, there is no-one to complain too! They know this, they know they can get away with murder - literally, sometimes - so why should they care.

  • Recently I collated all my TSH results that I could find since I was diagnosed hypothyroid in 1994. What is really interesting is how in 1994 my TSH was brought down from 17 to 8 by 25mcg T4, that was considered within the normal range then, infact almost all of the first ten years I was on meds my TSH never came within what is considered 'normal' today. Obviously the ranges have been adjusted over the years, and obviously 'normal' for a group of sick people is not the same as 'normal' for a group of well people, but it just shows how I was still undermedicated until I was on T3 and my TSH was supressed, so no wonder I still had problems with my weight etc. It's just the goal post have moved. This demonstrates with hindsight just how arbitary the tsh test is!

  • I wouldn't swear to it, but I think both the testing and the ranges have altered dramatically since 1994. From things written by member PR4NOW I get the idea that the magic number of TSH > 10 being required before treatment comes from those days. But when the tests were updated, the range for getting diagnosed never was.

  • All TSH ranges are arbitrary and not useful. They are a mathematical trick, nothing more nothing less. Look at this thread which I started healthunlocked.com/thyroidu...

  • And apparently according to an artical I read recently TSH is a piturity hormone and not a Thyroid hormone ..

  • Quote "So be careful what you are sure of and keep at it.". I'd caution you to do likewise. Lab tests provide the crucial clues for all of us. Clues that are mostly missed by doctors, although I'd assume you are one of the few that don't. Specifically for thyroid/adrenal sufferers the FT3, FT4 and cortisol tests provide the all important clues. That is why we endlessly tell people to get their TSH, FT4, FT3, VitD, Vit B12, iron, folate, ferritin etc measured. Because we KNOW the clues are in there. Tests are vital and you should never guess. Doctors need educating in how ranges are worked out and what results actually tell them in the light of a patient's symptoms.

    Re-read what I said in the light of your comment to which it was a reply. All TSH ranges are arbitrary and are a mathematical trick. Do you know the "average" TSH (with range) of a healthy population? Happy to provide you with references if you don't. TSH ranges are only helpful if the patient has primary hypothyroidism. The problem is that doctors take the TSH range as an absolute so secondary/tertiary is almost always missed. Hence my assertion that the TSH ranges are not useful. Arbitrary refers to how they are worked out. I presume you also know how that is done?

  • If a blood test is done at all. After complaining and complaining over several years and then finally paying a private ENT and had a barium swallow, to be told I had a post cricoid web which had to be removed. Had the procedure and 'lo and behold' there was no web there at all. What was on the barium swallow I asked with my hoarse voice.' No reply' was the answer. Continued on another few years, next ENT diagnosed 'acid reflux'. Needed medical assistance at airport. Straight to A&E and kept in overnight and discharged next day with 'probably viral with high cholesterol'. I cannot tell you how ill I was, bedridden. A first aider suggested thyroid - had a blood test and GP phoned straight away - to get a prescription for levo. Not one of the around 10 doctors ever did a blood test and my TSH was 100.

    Doctors do not know any clinical symptoms whatsoever. If you have a blood test they diagnose by the blood and not by the symptoms. Whereas before the blood test, doctors could diagnose you at ten paces - by your appearance and symptoms and treated you. Not now.

    I wont go on, and on and on and give my horrible experience of levothyroxine - that would be another long story. I want to forget.

  • You haven't answered my question. Do you know the real TSH range of a healthy population rather than the 95% percentile range, which has nothing whatsoever to do with where patients become symptomatic? As I said, I'm happy to tell you and provide you with references. It's very interesting, it's something all doctors should know, and it certainly gives the lie to facetious 95% ranges.

    I'm pleased you understand the real need for TSH and have references to prove it. Perhaps you should concentrate on educating other doctors. The TSH test as it is currently used and interpreted by the overwhelming majority of doctors is not fit for purpose. It is used solely to diagnose hypothyroidism for which, as you very well know, it is a useless and potentially dangerous test.

  • My first TSH test came back 2.0.

    I very much realise now that I was symptomatic even then but had to wait while tests slowly rose to about 5.05 (just outside local range) to get treated. So all the local range actually did was defer my treatment and, by so doing, ensure I went through more deterioration and symptoms. (I got away very lightly compared against many, many here and elsewhere.)

    Rod

  • rosetrees, I'd be interested in your references. PR

  • Here they are:

    aacc.org/publications/cln/a... Scroll to "TSH Reference interval"

    ncbi.nlm.nih.gov/pubmed/157... (read the abstract which says healthy controls had TSH 1.55 +/- 0.78 )

    press.endocrine.org/doi/abs...

  • rosetrees, thank you for the links, I had missed the 2013 AACC article by Dr. Thienpont. PR

  • Hi Rosetrees,

    Please, would u be kind enough to send me references of information of TSH. I have Hashi's just about to take Nature-throid.

    I am purchasing it from The London compound pharmacy with a prescription from a hormone doctor - Surrey Park Clinic Guilford

    She is helpful in that I ask her to write a prescription - which she was happy to do so.

    I informed her of various websites - to update knowledge- she was grateful- I stated with updated knowledge she could open a Thyroid clinic with a medical naturopathic outlook.. to help thousands of woman who are so insidiously sick.

    Watch this space...

    Something gotta give - change -

    many thanks

  • All the references are two posts above yours. You probably missed them as you scrolled down to leave your reply. :)

  • You're getting there. Now would you care to comment on how the vast majority of your colleagues view TSH? After all, not all thyroid patients can come and consult you.

    Then, please, comment on how the TSH ranges that the rest of your colleagues use, and believe in, affect their treatment of their patients and whether or not that treatment would be altered if TSH was either not measured or only measured if FT3 and FT4 measurement indicated that TSH was an appropriate test to do.

  • That ref was little more than a copy and paste job by a student. Seriously, that cannot have been written by a learned professor as the result of real research. Unless, of course, aDoctor wrote it him or herself!

  • And you know this how ?

    I think that I would prefer a reply from the medical professional to whom I was replying and not [Admin deleted in line with posting guidelines.]

  • Did you read it?

  • Yes, otherwise I would not have commented on it.

  • The conclusions of this reference are interesting, but I do not understand why there is no mention of T3.

    Is it not the case that T3 is the active Thyroid hormone and its levels are, therefore, critical to diagnosis and treatment of Hypothyroid symptoms?

  • aDoctor, I can't get that link from the AACC to work. What did it address? It looks like a 2006 article. PR

  • Sorry, I don't understand what you mean by practitioners? Are you in the UK? Here we all see GPs "general practitioners" who are qualified doctors.

    I know you are not responsible for your colleagues, but arguing that the TSH test is fit for purpose because you appear to be one of the few doctors on the planet that understand it is starting to sound a little facetious. To me at least.

    As I said, most of us don't get to see you. We get to see doctors who don't understand the test, yet use it as their benchmark.

    And oh dear, that aacc reference. I presume that paper wasn't written by the Prof whose name it carries, but by one of her first year students. Actually "written" is a misnomer as it's just a crude collation of a few graphs.

  • > we are literally prohibited from estrogen therapy as physicians,

    Huh? I'm in the US, doctors prescribe estrogen. Hell, I've known men that have gotten it. So.. am I misunderstanding you in some way? If you see fit to address an estrogen issue, you can.

  • "Even the technology we almost instantly communicate with was not due to anything you have done. " I beg your pardon, what the **** does that have to do with anything.

    " I am not sympathetic to people who want everything handed to them on a silver platter." But you seem to think I should be bowing to you - "What I ask for is some appreciation rather than demands. "

    Forget it. End of discussion. You just showed your true colours. You aren't here to help, are you, but to pat yourself on the back and show us how clever you are(n't).

  • Just because someone has a different perspective than you, does not mean that they they do not want to help.

    Your abuse and bullying of someone who does not agree with you is simply not acceptable and I am really surprised that there seem to be no moderators on this forum who can stop this.

    Nothing that you have contributed in response to aDoctor in this topic is going to provide any help to forum members who are looking for answers and support.

  • aDoctor, Why should patients support and appreciate their doctor if the patient's health issues are not resolved? Being told my blood tests meant "it couldn't be my thyroid" (I knew that, I had a thyroidectomy) and "it couldn't be T4" didn't make me appreciate my endocrinologist and my health was declining under his care/regime. T4+T3 was my solution but my endo should have figured that out when suppressed TSH and mid range FT4 resulted in below range FT3.

  • aDoctor, if you use the orange Reply button underneath the post you are responding to the poster will be sent an email alert that you have replied.

    There's no point in comparing the US system of healthcare with the UK NHS model. They're chalk and cheese. UK patients are treated by qualified doctors and specialists not untrained clinicians.

    I don't think I can be blamed because the senior consultant endocrinologist treating me didn't listen for 15 months when I told him Levothyroxine monotherapy was making me ill and ignored below range FT3 for months but agreed with me that my health was considerably improved after I self-medicated with T4+T3 for 6 months.

  • aDoctor, T4, T3 and NDT are prescription only in the UK but patients are permitted to buy 'non-controlled' medication for their personal use.

  • aDoctor, yes, I am very familiar with Dr. Carole Spencer, she is British by the way, I have read much of her work and had a brief email conversation with her. AACC has changed their site and hidden some info that used to be available it looks like. With the advent of more thyroid patients searching the internet I've noticed many sites closing ranks and demanding membership to access material. The Belgian Thyroid Club is an interesting version I found a couple of years ago. I never was able to determine if she actually made the presentation in person and changed the units to the European standard or if they just updated her presentation. I have her 2009 presentation which is a little more updated from the 2006 one. I also have a few articles she had on the AACC site. They also looked at how labs set their reference ranges in one study and quite a few 'wing it' so to speak. I thought maybe that is what the link was about. There was much debate after 2002/2003 when NACB and AACE wanted to change the top of the RR to 2.5/3.0. A lot of the debate was based on the NHANES III data. Dr. Spencer is still pushing for a lower top as shown by her article in Thyroid Manager from 2013.

    thyroidmanager.org/chapter/...

    How familiar are you with Prof Thienpont's work for the IFCC on harmonizing the TFTs? PR

    PS I already have a copy of the 2006 presentation and the Brussels version so don't spend time looking. Thanks for the 2006 ClinChem article, I didn't have that one. Dr. Spencer's point was that because of autoimmunity you would never have an accurate top of the range based on population studies so you should use an arbitrary one of 2.5/3.0. This was based on the fact that one of the assays used in NHANES III had 95% of the reference pop (13,400 some) with a TSH of 2.5 or lower. Dr. Surks disagreed and said it was only 86% and went off to develop a range based on age. Also the fact that 0.3-0.5 is very consistent across the age range for the bottom and if you used a normal Gaussian curve the upper would then be 2.5. ATA had a nice video from their 2003 convention by Dr. Stephanie Lee MD, PhD about this but that has also disappeared. Even with a lower top of the range all the TFTS, including the TSH, would still suffer from a 'low index of individuality'. It cannot be just a laboratory diagnosis as you have pointed out, it must be a clinical diagnosis with the tests as clues. The TSH does have a useful purpose but only if you understand it's limitations, which unfortunately most doctors are clueless about, they were never taught the science.

    PPS I did find the link but watch it soon, no telling when it will disappear. You have to use a PC, a Mac won't work and you have to use IE, Chrome and Firefox don't have the plugin. It is about 17 minutes long, pretty short. There is also one by Dr. Spencer if you have the interest. PR

    site.blueskybroadcast.com/C...

    site.blueskybroadcast.com/C...

    site.blueskybroadcast.com/C...

  • aDoctor, I am not medicaly trained I am just an ordinary women who if hadn't found this site and gained knowledge might not be here, my TSH was suppressed ( 0.02 ) and my GP was beside himself and wanted to reduce my thyroxin down to 50mcg and then even less .. my T3 and T4 had never been checked until I asked for it doing after learning what tests should be done on this site.

    My T3 and T4 were at the bottom of the reference range with a very suppressed TSH? I didnt have enough energy to dry myself after a shower I had to lie down , I had so much body pain in my muscles and bones I didnt know what to do with myself, my hair was falling out, my skin looked like a snake .. I couldn't walk because my legs wouldnt work I couldnt even lift them up and was about to buy a mobility scooter .... not to mention I had to have a bladder lift. I was asked by a physiotherapist what had caused my muscle atrophy ?

    To cut a long story short nothing was done that's how I was left until I had to have a change in brand of thyroxin because of a manufacturing problem.

    I had bloods done before starting the new brand.

    Within 2 months I was a different person the GP herself said if she had not seen it with her own eyes she would not have believed it , now the interesting part is my new blood tests .......

    My T4 and T3 had risen into the top half of the reference range at optimal level ?

    But my TSH was still suppressed at ( 0.05 )

    I will never allow any GP to leave me so ill again .. Maybe it was all in my head ?

    If the NHS won't do the T3 and T4 tests I will pay for my own tests.

    I don't care what the TSH says ... T3 is what my body runs on !

    You wouldn't buy a car and put milk in it or run a diesel car with petrol or visa versa ...

    I just want to feel well and be able to function.

  • Dr Shopping...

    Bleeding Bargain Basement ;-)

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